Anencephaly Investigation Central Washington, 2010-2016

Advisory Committee Meeting August

23, 2016

Cathy Wasserman, PhD MPH, State Epidemiologist for Non-Infectious Conditions

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Surveillance Update

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Neural Tube Defects by Year of Delivery or Estimated Year of Delivery1

2Total to date reflects cases confirmed by July 15, 2016 with a delivery or estimated date of delivery in 2010-2017.

1Estimated year of delivery is used for cases terminated or delivered before 37 weeks gestation.

Number Totalbirths

Rate per10,000 births

95% CI

All Neural Tube Defects2010 9 8565 10.5 (4.8, 19.9)2011 8 8528 9.4 (4.0, 18.5)2012 10 8352 12.0 (5.7, 22.0)2013 14 8084 17.3 (9.5, 29.1)2014 14 8432 16.6 (9.1, 27.9)2015 9 8332 10.8 (4.9, 20.5)2016 4 N/A . .2017 1 N/A . .Total to date2 69 . . .Anencephaly 2010 6 8565 7.0 (2.6, 15.2)2011 4 8528 4.7 (1.3, 12.0)2012 9 8352 10.8 (4.9, 20.5)2013 9 8084 11.1 (5.1, 21.1)2014 8 8432 9.5 (4.1, 18.7)2015 5 8332 6.0 (2.0, 14.0)2016 2 N/A . .2017 1 N/A . .Total to date 2 44 . . .

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Prevalence of Anencephaly, 2007-2011 National Birth Defects Prevention Network

Live births, terminations and stillbirths

Live births and stillbirths Live births only

WA Total = 8.2

WA LB + FD + Term > 20 wks

WA LB only

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Anencephaly Ascertainment Comparison

*Operationalized as 20+ weeks at delivery and not live born

3 County Area 2010-2016

NBDPS region 2004-2011

3 County Area 2010-2016

NBDPS region 2004-2011

Washington Texas Washington CaliforniaLive birth certificate 21% 37% 26% 39%Fetal death certificate* 30% 41% 33% 29%< 20 wks gestation 49% 22% 41% 32%

All Cases Hispanic Cases Only

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Case/Control N Minimum 1st Quartile Median Mean 3rd Quartile Maximum Anencephaly 34 0 190 592 737 971 2110

Spina Bifida or Encephalocele 18 32 203 405 548 850 1787

Control 42,200 0 100 446 672 1079 18870

Proximity to Production Agriculture (meters), 2010-2014

(High outliers not shown)

Differences between case and control mean distances to production agriculture were not significant using 2 sample t- test

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Occupation • Reported occupation of NTD cases based on birth or fetal death certificate

reporting • Certificates for 43 cases/37 had reported occupations*

Mother ControlsStudents 6% 2%Clerks 8% 3%Farm laborer 8% 3%Housewife/househusband 28% 16%Not Stated 33% 33%

Father ControlsFarm Laborer 3% 8%Sports Instructor 5% 0.1%Air conditioning/heating repair 5% 0.5%Laborer 5% 4%Construction laborer 5% 3%Not Stated 38% 31%

*Occupations include only reported occupations with more than one case mother or father

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Surveillance Summary • Cases have occurred across all years with no strongly

defined peak in time • No seasonality in case occurrence • Predominance of anencephaly among NTDs • Rates from the three county area appear on the high

end of state rates across the country • More anencephaly ascertained earlier than TX & CA • Cases and controls (live births/fetal deaths) same

distance from production agriculture • No occupations more frequent among case mothers

or fathers

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Interview Update

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Interview Summary

1Confirmed by October 10, 2015

Mothers of Infants with any NTD

Mothers of infants with anencephaly

Total Number1 64 41Number approached 34 22Number Interviewed 17 (50% of Approached) 12(55% of Approached)Mean Age at Conception 29 yrs 28 yrsHispanic Ethnicity 7 (41%) 6 (50%)Mexico Born 4 (24%) 3 (25%)More than HS 11 (65%) 7 (58%)Prior pregnancy 16 (94%) 12 (100%)Prior NTD pregnancy 3 (18%) 2 (17%)Any Prenatal Vitamin (PNV) 17 (100%) 12 (100%)PNV Use Critical Window 10 (59%) 8 (75%)Mother worked 11 (65%) 9 (75%)Occupational Pesticides 5 (29%) 4 (33%)Exposed thr Farm Work 3 (18%) 3 (25%)Any Pest. Use Home 6 (35%) 4 (33%)Mother Applied Pest. Home 2 ( 12%) 1 (8%)Occup & Home Pest. Exp 1 (6%) 1 (8%)

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Interview Results - Summary

• Interviewed women slightly older than all birth mothers in area

• Interviewed women less likely to be Hispanic than all NTD cases

• Interviewed women were more likely to report prenatal and folic acid vitamin use than in PRAMS or the medical record case-control study, and they did not appear to be folate deficient

• Many interviewed women reported risk factors for NTDs • About one third of interviewed mothers were assessed to

have occupational exposures to pesticides, predominantly herbicides, not all through farm work.

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Case Control Analyses

• Plan to compare Washington interviewed cases to NBDPS controls from CA & TX from 2004-2011

• Will explore known risk factors for NTDs individually (family history, diabetes, Hispanic ethnicity, obesity, use of folate antagonists)

• Will explore parental occupational pesticide exposure using the NIOSH coded data

• Will determine whether additional analyses are indicated based on findings

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Prevention Update

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Intercept Interviews

Location Health District # of interviews La Leche League meeting Yakima 5 Yakima Valley Farmworker’s WIC Clinic

Yakima 3

Yakima Public Parks Yakima 7 Yakima Valley Community College Yakima 2 Benton Franklin Health District Benton-Franklin 16 Kennewick Farmer’s Market Benton-Franklin 5 Prosser Public Library Benton-Franklin 4 TOTAL 42

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Interviewee demographics Number Age

25 years or younger…………………………..………. 26-35 years…………………………………………… 36-45 years…………………………………………… 46 years or older………………………………………

15 22 4 1

Race and ethnicity Asian, East Indian…………………………………….. Latina/Hispanic………………………………………… Native American………………………………………. White (non-Hispanic)…………………………………. More than one race:

Native American and Black………………….. Native American and White………………….

1 16 1 22 1 1

Insurance Status Medicaid………………………………………………... Private insurance……………………………………… None…………………………………………………….

21 17 4

Pregnancy Status Has children, not pregnant………………………….... Pregnant………………………………………………... Not pregnant, no children……………………………..

26 9 7

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Getting Health Information

Top ways of hearing about current health issues Latinas Non-Latinas

1. Articles on social media 2. Local TV 3. Online newspapers 4. Grapevine/family/friends

1. Articles social media 2. Grapevine/family/friends 3. Local TV 4. Online newspapers

Top preferences for receiving health information

Latinas Non-Latinas

1. Health care providers or clinics 2. Online 3. Family and friends

1. Health care providers or clinics 2. Family and friends 3. Online

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93%

60%

40%

40%

29%

26%

24%

24%

21%

5%

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Primary care provider

OBGYN

Midwife

Nurse

Health educator

Pharmacist

Doula

Social worker

Medical assistant

Community health worker

Most Trusted Health Care Professionals

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Folic Acid Knowledge & Use

• About half of interviewees had not heard about folic acid prior to pregnancy – And they wished they had received more

information • 60% of interviewees started pre-natal vitamins or

folic acid once they found out they were pregnant • Almost 80% said they “definitely will ask their

provider” for a prescription for pre-natal vitamins – Not a single interviewee with Apple Health

(Medicaid) knew about the new coverage

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• Top motivating factors for taking vitamins: 1. Good for own health 2. Good for baby’s health 3. Told to by doctor or midwife

• Top barriers: 1. The vitamins make you sick 2. Women don’t know why they’re important 3. Women forget to take them

Folic Acid, cont.

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Anencephaly Awareness & Concern

• About 70% of participants had never heard of anencephaly

• About half of participants wish they would have had more information about anencephaly prior to pregnancy

• Interviewees were more concerned about other birth defects (down syndrome, cleft palate) than anencephaly

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Recommended Outreach Strategies

1. Incorporate folic acid education into medical appointments

2. Use social media ads to raise awareness about folic acid

3. Share important health updates through local media

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Investigation Conclusions • Elevated anencephaly rate likely due in part to more complete

ascertainment of cases in three county area

• Case-control analyses and interviews of cases have not identified single preventable cause

• Despite pursuing multiple hypotheses, there is still no evidence that the elevated rate is due to folic acid deficiency, nitrates in drinking in water, pesticides or radiation from Hanford

• No identified prevention opportunity beyond promotion of preconception folic acid use

• Resources should be focused on outreach to educate women about prevention and early detection of neural tube defects, and promotion of preconception and pregnancy health

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Recommendations for Future Activities • Complete comparison of case-control data and end investigative

component of response if no hypothesis identified. Incorporate investigation findings into report. Review draft report with Advisory Committee in Fall 2016 and finalize

• Continue surveillance through August 2017 and review findings at that time. Determine continued surveillance efforts in Fall 2017

• Incorporate lessons learned from intercept interviews into continued outreach, development of preconception and pregnancy materials, and efforts to improve access

• Continue work with local health and other partners on folic acid outreach, communication and improvement of preconception and pregnancy health

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Questions/Comments?

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To provide comments or questions, please contact:

Cathy Wasserman, PhD MPH

State Epidemiologist for Non-Infectious Conditions Washington State Department of Health

PO Box 47890 Olympia, WA 98504-7890

cathy.wasserman@doh.wa.gov